Over Two Years - Still No Answers

[kategab]

I have read several threads on this site over the past couple years and would like some advice. Let me start by saying I am a 33yr old male. Back in Sep 07 I started to stumble a bit with the pronunciation of certain words, simple words sometimes, particularly words that end in "sks" like tasks, etc. Since that time I have progressively struggled to pronounce words correctly, despite it going unnoticed by many loved ones and co-workers. Today I really have to concentrate hard to pronounce some words correctly, which wears me out considering my job revolves around talking with people. What is weird is that whenever I read a book out loud to my kids I don't slur my words at all. I have been seeing a neurologist every 3mo since Jan '08. I have had an EMG, MRI, etc. and all has come-back normal. The only abnormal thing is my Cpk spikes every so often, but not real high like 250's, then back to normal 3mo later. In addition to this speech issue, I run 3 miles a couple times per wk, and have noticed more muscle soreness in my hands, feet, and legs than ever before, no noticeable weakness though. What is weird is that the muscle pain is the worst like 24hrs after I run, then it slowly goes away until I exercise again a few days later. Running actually causes my hands to hurt, which I really don't understand unless it's part of clenching my fist when running. I first started noticing muscle fasciculation’s in legs years ago while playing college soccer, but realize this is probably BFS and it has not worsened since Sep 07. The only other thing I have noticed is that whenever I elevate my arms or legs, they seem to fall asleep much quicker than in the past. My neurologist is not concerned and thinks I may have a pinch of some type of neuro disease, but I am not that confident at this point. Nobody is really noticing my slurred speech, but it seems to be getting harder to pronounce things correctly. Does anyone have any thoughts on what my next step should be? Maybe get a second opinion? The timeline doesn't really indicate ALS, but I know my body if fighting something, I just can't figure out what, nor can my neuro. Thanks for the help.

 

[Moonmark]

Hi Kategab--- just wondering if you are seeing a general neurologist or someone specializing in neuromuscular disease. If all this is still going on after two years and you are not getting any answers from your current neuro, I think a second opinion is in order, preferably at a large hospital with neurologists specializing in neuromuscular diseases.

perhaps a fresh perspective is what is needed. also, a neurologist specializing in neuromuscular disease has more specific training on the EMG and is better equipped to interpret the results.

good luck--

Sandra

 

[Twinsmom]

Have you thought about asking for an evaluation by a speech-language pathologist? That may help pinpoint what's going on with your speech frustrations. I would second Sandra's thoughts also about getting a 2nd opinion...

 

[trfogey]

If you have had the problems you write about for more than two years without showing any further substantial signs of progression, then you don't have ALS.

I second the recommendation to see a speech specialist.

 

[rom623]

Very similar things have occurred for me (and some others here, I believe) also. I am now convinced it is NOT ALS and have been repeatedly told so by doctors. However, I am checking into metabolic disorders, because they seem to fit very well. The general pattern would be that muscles are still strong (and readily pass the clinical testing), but they do not have the endurance they had - they tire more easily.

Does your weakness ever get better when you eat after not eating for a while, or does it seem to get worse if you don't eat?

 

[kategab]

Thank you all for the feedback, very helpful to get some other points of view.

My next appt. with my general neurologist is in March, I am definitely going to ask for a 2nd opinion with a neuromuscular specialist, along with a speech-language pathologist. While the other symptoms are bothersome and sometimes downright painful, the speech issues are really starting to impact me personally and professionally.

While I personally believe my issues with correct pronunciation and slurring have gotten worse since I first noticed in Sep '07, they are not at a point where anyone has really taken notice (I even asked a couple close friends), so I assume that would fall under the category of not getting substantially worse?

I guess my concern is being younger maybe something like ALS could take longer to really show-up, maybe even Bulbar symptoms? From what I have read on here though Bulbar onset would definitely be noticeable by now and I would not be able to disguise it? I have no swallowing issues. I am definitely aware of my speech issues when I talk, thus I have to try really hard to slow down and pronunciate clearly, which for the most part I must be successful at doing.

rom623, I have not really noticed any correlation as to when I eat, but I will pay more attention to it and let you know. Do you also have issues with speech? I have not looked into metabolic disorders at all, aside from the general blood work my neuro pulls every 3mo that has been normal aside from the Cpk every so often. Are there particular disorders or tests you are looking into? I don't really seem to get weakness, just soreness after exercising, mainly a burning sensation deep in my thigh muscles, along with pain in my hands and feet, no real cramps though. With three kids I have slowed down some over the past couple years, but still run 3 miles a couple times a week when I can fit it in. Three years ago I played soccer 3-4 times per wk, with no soreness and definitely no speech issues. Somehow I think my symptoms are all related being they all originated around Sep '07. My metabolism has always been great, I eat whenever and whatever I want without gaining much weight (usually pretty healthy foods though), but I’ve always attributed it to my activity level, being constantly on the move and physically active in sports, running, etc. I don’t know if somehow me becoming less active with three kids is playing a role in this? I have gained 4-5lbs since Sep ’07, but could lose that if I really wanted to by exercising more often.

 

[trfogey]

If you really had bulbar onset ALS, everyone would have noticed your speech problems by now. Being young has nothing to do with it. Your doctors say no and you say maybe. After two years, who is likely to be right, you or them? Hint: look at the life expectancy tables for bulbar onset ALS.

 

[rom623]

kategab,
I frequently have to work harder to speak. Same sounds come out, but just harder work, as if the prior muscle memory to say "That's" is not enough, and it will come out "at's" unless I work at it. Getting hard to chew food as well sometimes. It will get worse with more talking during a day. But it is sometimes worse than at other times. NOT what bulbar ALS sounds like from reading here.

CPK and burning muscles sounds like lactic acid buildup and muscle breakdown, which as I read (so take it for what it's worth) may be caused by the muscles not metabolizing energy as well. I have greater muscle burn as well. There are a lot of things that cause issues like this, so I would hesitate to identify diseases by name, as that would be doing again what has brought many of us here - using the internet to search on symptoms and then deciding "OH NO, I MUST HAVE <name a disease>".

Another thought - see if you remember taking any kind of antibiotic or cholesterol medicine around the time this started. The cholesterol meds sent mine into overdrive within days.

 

[kategab]

Thanks for the feedback trfogey, I am definitely guilty of "maybe". I guess it’s human nature when there seems to be no answers, I need to just trust their expertise and channel that energy towards more likely things to be causing my symptoms.

rom623, I don't remember taking any antibiotics back in Sep '07 as I rarely went to the dr up until this all started, but I will have to confirm with my family dr.

How long have you had the speech issues you describe below? Have they progressively gotten worse? I seem to have good days and bad, but it definitely gets worse later in the day, especially if I am on the phone and in meetings the majority of the day.

Do you ever wake-up with jaw pain? Back when this all started I woke-up with severe jaw pain a couple times a wk for over a month, since then it happens every month or so. Probably from clenching my teeth or something, but I had never been a clencher up until this all started.

Do you have severe fasiculations after exercising? I have always had them, but now they are in overdrive after I run. If you were to look at my calf after I run, it is essentially solid twitches all over. I am beyond worrying about it being there is no weakness, but somehow I think it is related to my other symptoms somehow.

Aside from the speech issues which are my major concern, I really feel like exercise is somehow poisoning my body given the muscle soreness and burning it causes. I really get no soreness in anything but my hands and feet which is puzzling. The muscle burning in my thighs seems to be deep, like close to the bone. I have tried massaging it out, that doesn't work.

This is probably a long shot, but I did get a Lyme Disease vaccination back in '97 being I am in the woods all the time, I wonder if that is somehow now contributing to my symptoms?

Sorry for bothering with the questions, I am just really curious what other people’s experiences have been as my speech seems to be getting worse and I want nothing more than to get to the right people to figure it out.

 

[rom623]

kategab,
The speech thing comes and goes with me over the past 2 years, related to face muscle weakness that comes and goes, but in a wavy downward cycle. That too is not like ALS. More like - muscle gets weak, muscle compensates as best it can, repeat cycle. But as with you, it is possible to work harder and hide it. I am guessing you are reading slowly and reading simpler books to your kids, and so the stress of muscle performance is less.

I have woken up with a sore jaw, not jaw pain, probably from grinding teeth at night.

The hard part is that for things to become clinically noticeable may take a long time, and if you do have muscle metabolism issues, you will seem "strong" to doctors in the 1-time push tests. They do have other tests to measure "exercise intolerance". But it might take a long time to get like that. I ran my best ever 10k in July 2007 even while starting to experience strange feelings in legs and hands while sleeping and some strange weakness symptoms in the back. If not for the cholesterol drug reaction, I might still be dealing with slow moving symptoms only.

I am personally looking at something abbreviated "mito" but that may be the furthest thing from what you have - don't get too caught up in that one either. I once put a list together of everything that had happened to me. It was over 25 lines long. Any doctor that sees that will automatically think "head case," and they certainly did that.

 

[irismarie]

talking about jaws; anyone else find their jaws are clenched incredibly tight?

 

[buddy77]

Hello,

I posted this previously and it's based on facts so it can't be disputed. Something is going on with you, but I would say it isn't bulbar onset ALS. In addition, 2/3 of all bulbar onset cases are femaile: Following is the post:
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Bulbar onset has a average age of 65 years of age with a standard deviation of 8 years. This means that 97.5% of all people who are diagnosed with bulbar ALS are over 50 years old..... and 99.85% are over the age of 41.

Also, you have to remember that only 25% of people who get ALS start with bulbar so this even further reduces the odds.......

So statistically speaking, since ALS is already a fairly rare desease, and you then drop the odds for being bulbar and then for age factor, I would say that it is almost impossible to get bulbar ALS in your 30's or even 40's.....
______________________

Take care and keep pushing your Dr's for answers:

Buddy